Friday, July 15, 2011

Autism Land

Admitting...anyone willing to forget the "normal"...willing to forget what is "appropriate"...and willing to open your eyes to a whole new world...

Before taking a journey into Autism Land...keep in mind that every resident is different...and every visitor has a different experience there.  It may even be hard to tell who is a resident and who is a vistor at times.  This is a "travel guide" to Autism Land....of course it's based on my personal experience as a somewhat permanent visitor there...

In Autism Land you "say it like you mean it".  Throw away the "Normal" slang...throw away the jokes...everything is literal.  So just say what you blunt and straight forward....don't hint...don't "beat around the bush" (and yes, if you said that to Addie she would be looking for a bush).  Last week I called Addie a "silly goose"...she was VERY upset...." I am not a goose...I am Addie...I'm not a goose....I'm not".  Of course...sometimes this can be funny...and it does makes for some very humorous moments.  My husband, J, and I usually look at each other...and silently laugh with our eyes.  But it's really best to be clear and direct.

In Autism Land a couch is not a sofa...a cat is not a kitty cat...big is not large...  Each object has a name...only ONE name.  Sure you may think... "couch", "sofa", "seat"... they all mean the same thing right?  Wrong in Autism Land.  Addie does not understand what you mean if you call an object the "wrong name".  She might scream...cry...or correct you bluntly. It may not make sense to you...but that's ok ... you don't make sense to her either.

In Autism Land change is not welcome.  Addie likes everything to be the same.  If I made toast first yesterday....then I can't make eggs first today.  Like many of the residence of Autism Land...she is having to live in your world...and is having to understand things that make no sense to her world.  So, I can't say I blame her...If I had to deal with all that she has to understand and cope with everyday...I might want a little sameness too.

In Autism Land there are rules.  Everyone has "rules".  I call them "rules" for Addie...because they are just that.  They cannot be broken...and if they are... there needs to be fair warning and many discussions about it before hand.  For you and may just be a "pet peeve" a certain side of the bed you like to sleep on.  But for Addie they are rules.  A few of Addies rules ...stand in a certain place in the bathtub...have me count to 7 while pouring water on her head...dress in a certain order (underwear first, then shirt, then shorts, then glasses, then brush hair) brushing is five strokes on each side of her head...bed time is the biggy (one story, lay down, pull up covers, tuck in caterpillar, one kiss, one hug, prayer, walk to door, blow kiss, then we recite the entire schedule for tomorrow - yes, even down to what are we going to eat for breakfast).  It may sounds crazy to some...but these rules help Addie cope with the fact that she is trying to live in our's a comfort to her...and it keeps her calm.  It helps her cope and to function.  

In Autism Land you may not speak the same language.  Addie's language sounds like your language...but it's not always the same language.  She may not always understand you and you might not always understand her. Addie may yell loudly in your face and scream "HELLO"...but she may talk quiet as a mouse to ask for help in a busy classroom.  She may repeat herself over and over and over.  It's ok this calms her and helps her to comprehend.  She may begin to quote a TV show or a book.  She may just want to tell you all about butterflies...she doesn't want you to interrupt...just wants to talk.  C has another language.  His language is with signs or pictures...or maybe some gestures or sounds.  He's just not the same language.  If you are patient and quietly listen and will understand their language.  You will hear beautiful stories from a child.  You will see the glimmer of light in their eyes.  Your heart will be touched and your mind will be opened to something new...a little bit of their world.

In Autism Land things may not always seem "appropriate".   Addie may run up to a person on the playground and scream "my fingernails are painted"...and then run away.  The person may look confused...but it was her way of trying to interact.  She may tell me sharply "be quiet mommy".  To others this may sound rude or disrespectful.  But I know that this is such a HUGE step for her.  When my voice was too loud for her a year ago Addie would have had a huge melt-down...and it would have been a rough day.  So when she uses her words to tell me to "be quiet mommy"...we rejoice...even though other's may think it's "inappropriate".  It's actually very appropriate.  It may seem like Addie says inappropriate things at the inappropriate times...but in reality it might be more appropriate than you think.

In Autism Land sock seams and tags are a HUGE deal.  "AHhhhh....there's something in my hurts me....ahhhhh"...Addie screams as I try to pull off her shoe.  To my surprise...there is nothing there.  I should correct myself me there is nothing....but to Addie the seam in her sock is painfully uncomfortable.  She cannot continue our walk because of the painful seam.

In Autism Land honesty rules!  "Did you hit your brother?"...."Yes I did"..."Why?"..."I don't like him"..."Is that nice?"..."No"....this is a typical conversation with Addie.  She has never lied to me...she has never tried to hide something she did wrong...nor does she ever assume anything.  She will tell you if she doesn't like you...or if you are too loud...or if you smell.  It might be funny or hurtful.  But when she says "I love you" you know it is real and true and for no other reason than the fact that she loves you.  So skip the's just the pure raw honest truth in Autism Land.  I guess could all learn something from this one.

In Autism Land the lights can be loud.  Addie calls them "scary lights"....the dreaded fluorescents.  She says they are flickery...and too loud.  She has "super sonic" hearing and notices the little things that we tend to drown out as background noise. 

In Autism Land emotions may not be what they seem.  Addie may scream and laugh when she is getting upset...she may have a furrowed brow when she is happy...she may be staring out the window when she is really listening to every word you say.  You can't always read her emotions...and on the flip side...she has a hard time reading your emotions...she doesn't notice your tone of voice or that "motherly LOOK" you give her when she has stepped over the line.  She doesn't see the subtle hints and body language.  Sometimes I wish I could do this too.  Just ignore all that...and take life for what it is...plain and simple.

In Autism Land the world is seen in pictures, patterns, and colors.  Addie immediately notices what color you are wearing...especially if it's green (her favorite).  She will then start matching it up to all the other similar colors in the room.  Don't try to pass off orange for red...she will correct you.  She always knows if things are the same or different.  She likes to color, size, and shape.  She likes to count things.  She likes to make lines of similar objects. She makes the most complicated beautiful block towers (and she would correct she calls them her "machines").  As a designer I love to watch her create patterns and lines...I love to watch her budding art skills.  Her creativity always amazes me.

In Autism Land there is true passion.  When Addie likes something....she REALLY likes it...and I mean totally whole heartedly passionate about it.  Her passion with butterflies has lead her to learn all the different species of butterflies and the entire life-cycle by age 3.  One day...while hiking through the woods...she says "that's a black swallowtail".  I looked at her and then at my husband and we shrugged.  I wasn't sure what she meant.  When we got home I realized that one of her books had the different butterfly species in the back.  I asked my husband and found out he had been reading those names to her....and she was RIGHT!!  It really was a black swallowtail.  From that day on...we have seen her recognize many different types of butterflies.  She even figured out the different between moths and butterflies...between male and female monarch butterflies...the different types of the caterpillar sheds it's skin...what their favorite plants are...and many many many other facts and findings.  She has such a thirst for knowledge.  We just keep encouraging her...keep on praising our little passionate butterfly scientist.  I never would have had this type of concentration at her age (...yeah right...who am I kidding...I don't even have that kind of focus at my age now).  She just continues to amaze me everyday with her sheer passion and brilliance.

Autism Land is a gift.  It will change you forever.  Being a permanent visitor has taught me so much in understanding, patience, humility, and tolerance in my life.  It has brought me to me has put me in the has taught me life lessons that I am forever thankful for.  I will never again look at someone else and judge...I will never again think that it can never happen to me...I will never again think I can do this life on my own.  The Lord has used Autism Land in my life to show me His love and strengthen my faith.  He has blessed me over and over.  My two little butterfly residence are perfect in His sight.  And I know....He made them just the way they are.

So take a trip and visit Autism'll meet someone'll laugh and you'll'r faith will be strengthened....and you might even realize that normal isn't so normal after all.

Tuesday, July 5, 2011

Butterfly School

This summer has taken us on a the butterfly school.  It began with huge leaps of faith...a ton of prayer....and ended with a blessing in disquise...

Before the end of the school year...I knew we had to find a new school for Addie and C.  Like many family's with special needs children, I found them caught in the "middle".  The school system said they needed to be in a regular classroom...mainstreamed...despite their behavior problems and verbal delays...they are both highly intelligent for their age.  Of course, not just every classroom is suitable for a child with autism.  Not every preschool understands how to teach children with autism.  Not every school accepts these challenges and focuses on their strengths.  We really didn't know where to turn.

I began to pray about this...pray for the right teachers...pray for direction...pray for peace about this decision.  Over and over, every time I asked one of our therapists or other families with autism...they all recommended the SAME school.  It was almost a little creepy to hear these people that did not know each other...with 100's of preschools in the area...all recommending the SAME one!!!  I had no idea why...I had never heard of this school...but I really felt the Lord was leading us to go there.

So, I made the call.  Immediately I asked the receptionist about children with they accept them?...can they work with all the therapists?...How do they handle the behavior problems?...Are the teachers educated in special needs?  I was waiting for her to say something negative...or maybe not understand...or give me a patient answer.  I was thankfully she shared her personal story with me that her son has autism...aspergers syndrome.  She was so understanding and really encouraged me that everything was going to be fine and they know exactly how to work with all types of children.  She even told me how successful her own son had been in that school.  She told me about all the special training the teachers attend...and the many children that they have already attending with special needs. A wave of relief washed over me.  I was so excited.  This was the perfect school...mainstream...yet specialized in special needs...the perfect combination for my two little butterflies. Then I asked the dreaded question about tuition payments.  Of course, it was more expensive than the school they had gone to before.  We had gotten a scholarship based on our income at the other school...and I had no idea if we could get one...and for how much at this new school.  After I hung up the phone I was in tears...."Lord why did you send me to this school...I already love it...and we can't afford's perfect for the kids...but what do you want me to do?".  The Lord was quiet...or I wasn't listening is probably more like it.  I was trying to figure out how I was going to do it myself...forgetting that He will provide.  I was in my mommy stress mode trying to call every other school...trying to see what else was out there.  There had to be a way....and I was going to figure it out.

Meanwhile I was asked to speak at a meeting with several educators and area preschool directors about Addie.  I was a nervous wreck...but somehow I made it through.  Afterwards, I was introduced to the director of the SAME preschool that everyone had recommended.  It gave me was another sign.  I immediately had such a peace when talking with her...and sharing with her.  She assured me that they have many children on the spectrum and with other special needs.  In that moment...I just knew I needed to go take a tour and see this school.

The day came for the school I walked in...I was praying "Lord give me a sign that you want us to go here...and we will somehow figure out how to pay for it...just give me a sign.".  I'm sure He was laughing at if he hadn't given me several signs already.  As we walked around the school the director took me outside and shared with me her own story about her grandchild with special needs.  We both got teary eyed as we talked about it...and I knew she really understood and has a heart for these kids.  Next we walked into Addie's my was FULL of butterflies.  I almost burst into tears.  Her new teacher told me that her favorite thing is butterflies...they take trips to see the butterflies...they have a butterfly garden...they have a worm garden...they love bugs...and on and on.  Everything was sooo perfect for Addie.  Then I noticed they had a picture schedule on the wall...and a quiet corner to escape.  And to top it all off....The quiet corner was GREEN....Addie's favorite color.  She is extremely color sensitive...and LOVES everything green.  The whole time I had chills...every single detail was almost too perfect!!  I think God was laughing again...saying "you want signs....well here's some more for many signs do you want??".

I knew I needed to make a decision...quickly...they only had 1 spot left for Addie's age group.  I was in tears on the way home...."Lord...what are we going to do...we can't even afford the first month...why are you torturing me."  I think I was still trying to do it on my my own my own logical way...this wasn't going to work.

We had to decide.  Summer was coming fast and we had to get the kids into school.  For me as a kid....summer was always a time full of fun...pools...beach trips...watching homework....making forts in the woods...playing kick ball until the lighting bugs came out.  Most kids love summer break....they love a chance to relax and not have the normal busy routine.  On the contrary...for a child with autism...the change in routine of being out of school for summer can be almost maddening.  Addie and C thrive on routine...and cannot handle too many changes at once.  Changing school was going to be monumental...and overwhelming for everyone...but they have to be in school.

After prayers upon prayers...we put down the deposit.  I knew everything was telling us to go there...the Lord was crystal clear that this is where we needed to be.  He didn't even "crack" any other doors....just left this one wide open.  It is honestly one of the HUGEST leaps of faith I've ever taken.  We paid the first month...and had no clue how we were going to pay for the next.  Honestly there were moments I felt a peace about it....and moments I was wondering if I was going crazy.  We applied for a scholarship...and just prayed...and prayed...and waited...and waited.

Over the next month I went to a seminar about autism.  Who was there?...And who ended up at my same table??  Addie's new teacher!!!  Again this was another confirmation of our decision.  I got chills when I realized that out of all these people we ended up at the same table for the day.  The teachers were taking their time to do special training in specifically dealing with children with autism.  It was amazing.

So the first day of school came and went.  Social stories...visits...driving through the parking lot....over and over and over.  We were super prepped for a major meltdown for Addie.  Meanwhile we were just discovering about C's needs.  Their teachers have been amazing.  After the first week or so...both were settling in and really beginning to enjoy themselves.  Every day when we get in the car for school Addie asks "are we going to my new school?"...and I say "yes"...."YAYYY" she screams.  This is a first for her...I have never been so thankful.

About two weeks before tuition was due...I was beginning to panic.  "What are we going to do if we don't get a scholarship?  Lord ...helllo....are you there??"

Then it happened...

Monday morning I was corralling the kids into school.  It was an especially rough transition that morning.  C escaped and ran away from me....straight into the director and a new family having a tour.  Then Addie got upset and left C's classroom door open...letting out several running toddlers.  Finally the teachers and I corralled them all back inside.  Addie was screaming "I don't want them to look at me....ahhhhhhh....stop....ahhhhhh"...about the toddlers in C's class.  C was screaming and kicking.  Phewww...we finally left C's class and headed towards Addie's.  One of her friends says..."hey Addie!!!".  Uh ohh I we go...."NOOOO....I don't want my friends to see me...ahhhh...don't talk to me...don't talk to me....ahhhhhhh".  Addie likes to be the first to say hello...and if she doesn't know what to say...she gets really upset.  After a little struggle...and hiding under a table...and a lot of prompting...she went inside.  The teacher slowly coaxed her into the group and she seemed to relax.  I stayed to peek inside the two-way glass and watch them settle down.  Finally both kids were settled and I headed towards the director's office to appologize for our dramatic entrance this morning...and to thank her for her help.

She asked me to step into her office.  My heart sank...I thought...oh no maybe we were really too crazy this morning.  Maybe she's going to tell me to try another approach, etc...  I wasn't sure.  She began to tell me about her church on Sunday.  The church supports the scholarship program at the school...and the pastor had asked her to speak on Sunday about the scholarship program.  She told me that she had decided to speak about Addie...but had kept her name annonomous, etc...  I totally relieved she wasn't upset about our grand entrance.  "That's great" I told her.  Then she said "After hearing your story, there is a church member that has felt lead to sponsor Addie".  All the sudden....I felt like she was speaking in slow motion and I hadn't heard her correctly.  "Sponsor Addie?" I asked...."Yes...sponsor...they want to pay for her tuition".  I felt a huge lump in my eyes immediatley welled up with tears.  We both just stood there crying and hugging.  I didn't know what to say...I didn't know what to do....I couldn't believe what had just happened.  TOTAL and complete SHOCK.  NO WAY...NO WAY...I just couldn't believe it.  I got in my car and bawled my eyes out all the way to work.  "thank you Lord...thank you Lord....thank you could I have ever doubted you?...forgive me are such a huge God....thank you for giving us the faith to put the kids in this school....thank you".

I called my mom and dad to tell them the news.  My dad was dead silent on the phone......then he told me about their Sunday school class.  On that exact the exact time the director spoke to her church and the person felt lead to sponsor Addie...his Sunday school class did a special prayer for our family.  They prayed specifically for Addie and C's school tuition and our finances.  A cold chill washed over me...and I was in tears again.  WOW...there is such power in prayer and in faith.  God called us to take a leap of faith....and in His perfect timing....He provided.  I felt like shouting from the rooftops.

This is the summer of the Butterfly School.  I'm calling it that because of the butterfly's that lead us there and the promise that God made to us.  I think Addie and C are going to fly there...maybe even soar...and I know they are going to be surrounded by the best teachers and therapists to help them in their journey.  I know this will give them the best possible start to their school career.

To the person that felt the Lord calling you to sponsor Addie....I can never thank you enough for answering that call.  You allowed the Lord to use you in His were a vessel for Him.  This has blessed our family in such a way that will change us forever.  You have truly made a difference in life of a child.  Thank you.

I have once again learned that I cannot do this alone.  There are so many people praying for us and supporting us.  We are so blessed and so thankful for this crazy, stressful, insane, maddening, beautiful, amazing butterfly journey.